An Aledo High School grad is bringing attention to a rare genetic disorder that affects the physical and intellectual development of one in 10,000 children. April Robinson Duff’s three-year-old son Chase was diagnosed with Cornelia de Lange Syndrome (CdLS). Duff spoke with WRMJ News Director Jim Taylor Thursday morning. Saturday is Cornelia de Lange Syndrome Awareness Day.
Duff is a 1999 Aledo High School grad. She and her family reside in Oswego, Illinois. You can learn more about CdLS at www.CdLSusa.org.
The following is from the CDLS Foundation:
April and Jesse are the parents are 21-month-old Chase. They have been married for 7 years and tried from the beginning of their marriage to start a family; they finally got their wish through IVF treatments. April remembers her pregnancy as being a typical one, however Chase stopped growing in utero so they had to meet with a neonatal neurologist. When Chase was born, he was immediately rushed away because he stopped breathing and the neonatal neurologist suspected “syndrome.” It wasn’t until April insisted on knowing what was going on with their son that a geneticist finally confirmed to the family that Chase had CdLS.
Jesse jumped into action and got onto the internet to learn more – and what he initially learned terrified him. He reached out to the Foundation and was comforted by the voice of Lynn Audette. She not only helped him put his mind at ease, she welcomed the family into the community. They had a conversation that lasted hours and she helped Jesse understand more about CdLS. April on the other hand was having a hard time coming to terms with the diagnosis. She would be at the hospital all day and come home to sleep – she wasn’t ready to look at the information on CdLS and wanted to do genetic testing. One day Jesse came to the hospital with Lynn on the phone and said to April “I have someone I want you to talk to…” That was what helped April finally accept Chase’s syndrome, “it was scary but comforting to talk to Lynn.” Once April looked at the pictures Jesse had, she knew in her heart that Chase had CdLS.
The biggest obstacles Chase and April face are uneducated doctors and isolation. It is frightening to them to put their son’s life into medical professionals’ hands who are unsure on how to care for him. They are constantly advocating for Chase and at times feel like no on truly understand what they go through. In April’s opinion, the CdLS Facebook Discussion Board helps to combat their obstacles. She recalls when Chase was first born she didn’t post pictures on social media. However, when she joined the discussion board she was made to feel welcome. She finally felt comfortable to show him off. The discussion board gives April trusted advice. She knows she can reach out at any time and receive the encouragement she needs.
When Chase was first diagnosed, the future looked very scary for the family. However, with constant encouragement from the Foundation and families all around the country, their future holds anything they want it to hold. They don’t fear the diagnosis and see peace in their future. “Chase has a community of brothers and sisters. We gained a huge extended family. I would never have that if Chase was a typical child.”